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ysabel

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i know I'm not alone on this we all do this... fall due to loss of balance. it only scared me bad when i fell down the last few steps! no injury thank god! but makes taking steps scarier! my primary here is setting me up with neurology to see if i need an assistive device again.

on another note i, did get approved for medicare!

i vent a little here or explain because for most part many i know think parkinsons is about tremors and stiffness and dont realize falling, loss of balance and fatique are all part of it.

although not als I'm sure these things we all have in comon

edited to add.. meant to ask does anyone else have joint pain like from moving the legs because of lacking muscle? i mean because my muscles don't pull my weight it rests on my
bones if that makes sense?
 
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affected

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sorry about the falling, it's scary isn't it?

my PALS gets a cramp in an arm muscle for the same kind of reason - his arms feel very heavy, and for example yesterday he went to reach out a bit to pull the car door shut and nearly fell out because of the sudden sharp pain. I'm sure he would say your description is just what he feels in his arms. He is also getting a very frozen shoulder on one side and a fairly frozen shoulder on the other.

You know bones do weigh a bit, and with the muscle wastage and the misfiring of the impulses, stress on what muscle is left is really quite significant.
 

ysabel

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i certainly grasp what you are saying and can only imagine what all the suffering of als is.

i know what i have doesn't compare so i try not to say much but at times i just want to vent even typingg this out bothers my arm and hand. i dont even hold the phone with my right hand.
but even after all that i know I'm luckier than many here. i tried other boards for parkinsons but didnt have any activity. plus i really like you all here.
thanks for taking time to respond.
 

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this afternoon he lay on the lounge and had a good sleep, no shoulder pain (lounge is very soft). Then went to stand up, lost his balance, put his arm out to stop himself, thankfully he fell towards the lounge, but the arm collapsed and he fell onto it.

More arm pain than sleeping in the bed poor man!

I get the medical sheepskin tomorrow though which I hope helps in bed!

I think you get support where you need, and if this is better than a Parkinsons forum, that's just fine!
 

ysabel

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oh i sure hope the medical sheepskin works out for him to get a better nights rest.
 

AfraidButNotAlone

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Falling is terrible. I have fallen up the stairs once. Stumbled a bunch of times. Down the stairs twice. And I fell in a parking lot when my foot didn't clear the curb. Each fall leaves me in a ton of pain that doesn't go away for two or three days. I feel even weaker than I did before the fall, but the strength comes back if I rest.

I now see that my left foot is angling out as I step, my pace is slower, stairs make me tired.

I get so scared whenever I have to step over something or use the stairs. I consciously say "up" for each step I have to take.
 

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got the sheepskin, now we see how he goes tonight, fingers crossed!
 

AfraidButNotAlone

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Good luck! Forgive my ignorance, but what will the sheepskin hopefully accomplish?
 

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oh good question really :)

he has a lot of frozen shoulder problems due to so much muscle wastage in shoulders and arms, and gets a lot of pain in bed. Mostly this is from him being so bony - we think. If he has a sleep on the very soft lounge he doesn't get all the pain.

So the medical grade sheepskin is used for pressure care in hospitals to help prevent bed sores, and whilst he isn't getting bed sores, we hope it will relieve some of the pressure. So just having a softer layer to lie on will hopefully relieve some of the pain for him.

I would love to use pillows to help position him better, but he can't lift a pillow himself, and so he wouldn't be able to turn over by himself at night, and even though my sleep is disturbed a bit now, it would be hard for him to feel he needed to wake me to turn him.

Mind you, that is coming, when his arms won't work at all he will need that assistance.

Long answer, sorry :)
 

ysabel

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well i got an acute apointment to see the neurologist due to my fall and i need to get back on meds. im new in town so good idea to get established anyways .
im glad your friend has the sheep skin tillie.
 

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sadly the sheepskin hasn't worked, another $300 down the tube, though he will likely need it later.

He finds it too hard to turn over as it 'grabs' a bit.

He is sleeping much of the night on the lounge now, but we are hopefully getting an electric recliner chair on loan. The lounge is OK, he is comfortable on it, but getting up is too hard and he risks falling. The chair has a 'stand up' action which will be great for him.

How are you doing now Ysabel, are the meds helping?
 

ysabel

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i have to laugh at myself my apt. was with the gp... my daughter took the call so i thought it was for neurology. i did get refered in for october 4. so no meds yet. thanks!
sorry the sheepskin didnt work out!
i hope the reclining motorized chair works out better.
 

AfraidButNotAlone

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Bummer :-( I hope the chair works out for him!
 

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thanks :)

I hope they can get it organised fairly soon for him, this disease sucks, I hate watching him in pain :(

Ysabel that's too funny, I can't do anything without my diary!
 
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